On the morning of October 18th, I was listening to the CBC radio’s interview with Dr Bigham regarding his new book “Death Interrupted, How Modern Medicine is Complicating the Way We Die” and afterwards I ordered the book from Amazon and spent a few weeks digesting its contents.
Surprisingly, nowhere in his book does he mention the role of death doulas, despite practicing in countries where death doulas complement the palliative care team, the MAID team, and work directly with both the terminally ill and healthy individuals who wish to get their affairs in order.
Throughout the book, the doctor explores the death dilemma from both sides (the medical personnel as well as the family/patient). Death is “the greatest mystery in science” according to Elizabeth Kubler-Ross, the Swiss American pioneer in the study of death and dying. Or, if you believe in the stories you read by the author J. R. R Tolkien, you might view approaching death as a compassionate offering from God.
Dr. Bigham suggests four steps once you have read the book. Step 1 is to “Think about death” (page 283), Step 2 is to “Talk about death” (page 284), Step 3 is to “Write about death” (page 284), and Step 4 is to “Live your life” (page 284). The remainder of this blog will focus on Steps 1 and 2. A subsequent blog will focus on Step 3 and prior blogs I have published have focused on Step 4.
Dr Bigham’s Steps 1 and 2 focuses on thinking and talking about death. These processes start with clarifying your own values and beliefs. Then discuss your wishes (and later document them) with your friends and family when everyone can approach this tough conversation in a calm and rational way. Death doulas are great facilitators. The more you delay the conversation, the more difficult it becomes for everyone. When someone is provoked to contemplate their death ahead of time more reasoned, measurable decisions can be made. These decisions favour how to exercise power over how they live in the days before they die. One could argue that a cultural shift is needed- to where people took personal responsibility for the undeniable fact that they would die, and it is their duty to their loved ones to have a previously discussed plan in place.
In a nutshell, it is time to address the elephant in the room and confront our fears of reaching the end. Part of the solution is more education about death, as well as less stigma for conversations centered on death. Joining a death café (online or in-person) is a great start. If you need help, death doulas are a great resource. When someone is educated about the end of life, they tend to accept dying.
Candi Cann is a professor of religion at Baylor University in Texas who Dr Bigham interviewed for his book. She has authored three books herself about dying in a digital world and gave this advice, “If you really love your family the way you think you do, you should do all the work ahead of time. Don’t make them figure it out. It’s a gift when you do the work ahead of time. You are saving them from having to do difficult work in a difficult time.” (Page 127).
For families who do not have such information, a fear of death comes in several forms. There is the fear of loss, as well as an aversion to making the tough decisions technology has forced both doctors and families to make. Doctors and nurses (and other health field related personnel) know that dying is scary. There may not be the time that both sides wish to have to build a relationship, getting to know the patient as a person and to then establish the goals of care (aka patient wishes). These goals of care may be framed as therapeutic options (aka aggressive measures) or keeping the patient comfortable for whatever time they have left. Often the concept of preventing death is not the same thing as saving lives or having the same quality of life as before.
As Dr. Bigham points out in his book (Page 30), “Technology can prevent death from coming too soon, but it can also delay its timely arrival. With the power granted by advanced technology to cheat death, doctors must also have the wisdom to know when and how to wield it, because death will come for all of us.”. Doctors are aware that preventing death is not the same as saving lives. Our job as a patient is to find a space inside of us to desire a death that comes at the right time, without suffering, anxiety or pain but instead is comfortable and meaningful.
Contemplating our own death can be difficult, and like mentioned earlier, when someone is provoked to contemplate their death ahead of time more reasoned, measurable decisions can be made. Life happens and we may find ourselves in situations (e.g., a terminal or troubling diagnosis, a family or friend in ill health, the loss of a loved one) where we are forced to think about our own demise. As death doulas we know that we can’t convince everyone to accept death, or get onboard the death positive movement, but we’d like to think that people are persuadable.
There are cultural differences in how death is accepted. Dr Bigham points out in his book how “In Kerala, India they deputized volunteers across the state to be involved in caring for people towards the end of life, and they had incredible outcomes in terms of making people aware of death and dying.” (Page 193). Death is something that comes for everyone, our job is to be prepared for it by having thought about it and having talked about it to our friends and families (as well as documented our wishes well before they need to be accessed).
In conclusion I leave you with the sentence that Dr. Bigham uses at the end of his book. “…I’ll wish you a good death; not a moment too soon or a moment too late.” (Page 285).